Cellcept side effects

Hi all, I am really struggling to adjust to the cellcept. I’ve been on it a month and the side effects are getting worse not better. I have the full range from the headaches, nausea, diarrhea, loss of appetite, abdominal pain, chest pain, skin lesions, tremors, all-over shaking like the chills but I’m not cold, all-over weakness, and worsening fatigue. It also appears to be making my depression worse. This is the third time my rheumy has put me on it and I’m beginning to think that my body just doesn’t like it. How long does it take for the side effects to get better? My rheumy pretty much just blows off my concerns. I think I need to find a new one who actually listens to me and does his or her job. I’ve been battling this disease for 30 years so I think I know when something is wrong. Ever since I switched to Kaiser 4 years ago my lupus has been out of control. My last doc would put me on a course of cytoxan for 3 to 6 months and I’d be in remission by month 3. This rheumy wants to try everything else first. Rituxan did nothing, the cellcept is making me feel worse, I refuse to take prednisone since I was on it for years as a teen. I’m getting really frustrated and am worried that the cellcept is doing more harm than good since most of my side effects are on the tell doctor immediately list. I tell him and he blows me off. Ugh. Sorry to vent but I do need to know how long it takes to adjust. Thank you, Annemarie

I would get new doctors that support you…I would get off concept…I would do prednisone because now you need a rescue…do whats good for you…its a lesson about standing up for yourself. …I had a hard month with this…boundaries and respect…self worth…you can do it…also call your counselor…or the crisis line…we are here for you…get some klonopian …its a cycle you are making worse…once you are calm and well and rested…you can make better decisions. …good luck…

hello Dancermom. first the pharmaceutical's are making a fortune making us sicker. anti-depressants make us more depressed,inflammation medication makes us fat like santa claus and miserable.i to have a rheumatologist and the toxic waste she's giving me placed me in the hospital. our bodys are human when we consume synthetic metallic medicine in our body it does a adverse effect casing life threatening situation's..my adice: look up naturpathic doctors in your area. preferably excepting your health insurance. and firat and for most get of those medications the governmentis killing us with this crap. don't get off the medication until you converse with the homepathic dr or naturpathic dr. ok? good luck

e-mail to me anytime I have systemic lupus and, im here for you and anybody who needs a friend and good advise. god bless

I am so sorry that the Cellcept is causing you such problems! I started it in August (didn't want to, kicking and screaming) along with continuing the Pred (my best "fren-i-my"). I had few problems with the Cellcept (I started of gradually with 500mg 2xs a day for a month, then 1000, now a daily total of 3000). The Cellcept/Pred combo has knocked out a 2-1/2 year long flare!!! Now I'm backing down the Pred, and then we will back down the Cellcept. Long process, but I am finally relatively functional. Could you take a lower dose of Pred (15 mg daily) for a limited time? I know that you are miserable. And when I first started on Pred. a couple of years ago, I was crying so hard my rheumy wouldn't let me drive home for an hour! But after suffering acute kidney faliure in August, I chose meds to save my kidneys. And it worked. For me. I am pulling for you. You are right. It is important to be listened to by your doctors!!!

I tried the cellcept. It made me feel horrible. Now he put me on myfortic. It’s an enzyme derivative of cellcept. It just gets metabolized differently. It’s also delayed release. It seems to be much better so far. I’ve been in a horrible flare. I’m always complaining about getting off prednisone. The last visit I let him increase it because I was THAT miserable. You probably need some prednisone at this point to bring the inflammation down. I know how you feel. I HATE it with a passion. “Frenimy” is a good word for it. I can function n get off the couch when I take it.

Thank you all, I probably should have explained that my doc doesn’t want me to take prednisone either. I’m already osteopenic and went into menopause at 32 so protecting my bones has become a priority. Not to mention that it tends to trigger a manic-like mental state which is really tough to deal with. I’m really trying to find out if the side effects ever get better. I had read that it can take 4-6 weeks to get over the worst of it. I’m just wondering if it’s true. If it does get better then I will tough it out. I discovered that all three rheumys at Kaiser Roseville have poor ratings so I’ll have to switch facilities. I’m hoping for a woman this time even though it means a longer drive. It’ll work out eventually. Thank you again, Annemarie

Again, thinking of you!!! We are all in this together!!!

Hi Annemarie,

I started taking cellcept at the start of Feb and it was a tough month. I had a lot of digestive side effects and headaches but things are getting better and i have noticed I am having some better days (not great but better). My doc said it will take 3 months to begin to work and that the side effects ususally don;t last so hang in there. Of course if you feel that you are not getting the support and care you need from your doc you can always get a second opinion. I switched docs a year ago and i think it saved my life.

Take Care,


It sounds like to me that you are having an allergic reaction to the cellcept, and should go to the ER....they will help you. I am allergic to so many meds, the list is very long. I wound up in the ER more times than I can remember. THEN find new drs.......please.

Good luck to you.

I started taking cellcept last year June and at present I'm on 1000mg a day. When I first started I had soft stool for a few weeks (not considered diarrhea) but then it tapered off and stopped. That was the only side effects I had from cellcept. I must say it has worked for me because when I started I was leaking 6 grams of protein. My rheumy put me on cellcept along with prednisone, plaquenil and ramipril. I went from 6 grams, to 3 grams, 2 grams and now at present my protein leakage is 0.6. As you can see that's a drastic drop in protein levels. My rheumy was so happy she told me I am almost normal again. So as you can see cellcept did work for me but keep in mind that although we all have lupus our bodies react to medication differently. By the way, I would find another doctor. Hoping you feel better soon. Love and kisses!


Thank you all, the odd thing is that today the nausea disappeared and I’ve started to feel a little more like myself. Still hurting and tired but no stomach issues. Now to see if it actually helps the vasculitis. Still no appetite but that’s actually a good thing since I put on too much weight with prednisone…lol I was actually able to goof off with my youngest before school this morning : ) I haven’t gotten labs done yet but I hope that my protein levels are better. I really appreciate hearing from those of you who have taken cellcept. It helps to know I’m not alone in this. On a happy note my 16yo just pitched a whole game and they won! Hoping the colleges pay attention to MaxPreps and his stats. At my youngest’s game now, hiding under my sun umbrella and hat. Love to watch my boys play, wish I could play with them the way I used to but I’m happy to be outside watching them : ) I hope all of you get to enjoy the little things that make life worth living. Gentle hugs to all, Annemarie

So glad to hear that you are improving! Cellcept saved my kidneys & my quality of life. I’m thinking of you!!!